THE UNPUBLISHED MEMOIR, I Hope You Know You're Fodder For A Book Someday
Updated: Nov 16, 2021
Just got home. Today, Dr. A informed me she's going on holidays for the next month, so nothing will happen re gaining Bill’s release until she gets back. I said Bill had been incident free for eleven days, and the original statement of when he could be released from involuntary care was that he was incident free for two weeks, so why couldn’t she release him now. Her reply… “He's not as good as I want him to be.”
I asked her what she meant by that and she said she wanted to see him happy.
Happy—when he's dying and knows it; when he's been filled with all manner of drugs that have made him miserable; when he's still made to go to the bathroom in his pants when I’m not there; when he's regularly accosted by other patients; when he's said numerous times he is very unhappy being there, and he's locked up. For anyone to be happy in those circumstances they would truly have to have zero thinking capacity, and Bill is far from that.
I pressed her and got her assurance I would be able to take him off the ward, and took him out for the first time the next day, with his nurse and a security guard in tow. They followed while Bill and I walked around the yard then stood back while we went through the lineup at Tim Horton’s. While we were waiting Bill said, “But I don’t have any money.” I said, ‘I do,” and handed him $20. He paid, and his nurse and the security guard were flabbergasted that he knew exactly what to do, and I was once again struck with the realization that even the best staff don’t realize patients have the wherewithal to think and to deal with lots of things in regular life they don’t see because of the behavior they might show when they’re drugged and locked up.
I keep wishing I could turn back time and refuse to take Bill to the Campbell River ER in the first place, but that’s fruitless. I cry a lot and often feel like I’m going to break. Friends keep telling me I’m rational and strong, but in private I'm not rational at all. I scream and cry and rant and pound things and wish with all my heart I could end this nightmare. But how?
On top of that, I feel bad that I’ve tended to lose sight of my children’s plight in all of this. My daughter has to work within a system that’s broken, and listen to my ranting about her dad, all while she's grieving for him, too. Chris also must somehow accommodate both his own grieving for his dad with my reports of all the problems, and from a distance where he feels helpless to do anything to boot. It's not fair to them at all, or to any family who has to endure similar situations.
Dr. A seems open to discussion, but in the end she does what she wants to do. She told me she was going to take Bill off everything but Nozinan and Dilaudid, but during this last visit I asked what his meds were and was told he's still on Mirtazapine as well. When I questioned Dr. A about that, she told me she didn't want to do everything at once.
So, in spite of continuing to get ECT treatments he's still on a drug that is an anti-depressant and has already proven to be ineffective, which is ostensibly why he started getting ECT treatments in the first place. How does one negotiate with that kind of thinking?
It's no wonder so many families just give up. I’m screaming out loud and inside myself, but I need to cool down.
A Breath of Relief
Bill has now been incident free for 13 straight days and I was told last night that S bathed him yesterday and they were laughing. She told him she had sciatica, too, and he commiserated with her. Kind of amazing that he still has compassion for others. Another testament for me his brain is still functioning pretty well. It’s good news for me to know she’s trying to connect with him, and seems to be succeeding at long last. But I’m not going to cheer just yet.
I just met with Dr. C, our new GP, and talked with him about bringing Bill home. He's on board and said he and I need to communicate regularly, which I like. I gave him copies of all the correspondence I've had with doctors, hospital administration, and the Quality Patient Care Control Board so he would know the complete background for Bill.
I also finally met with Evergreen Seniors' Home staff and explained the situation to them. They asked for access to some of Bill's records, which I gave them. They'll do some research on him and decide whether they feel equipped to handle him and get back to me, but it seems hopeful they’ll accommodate us if they can. That might mean staff from there coming to our house for some hours three to four days a week, or maybe a subsidized bed at Evergreen. At the moment their subsidized beds are full, but things change. First, I have to know if they're willing to take him if a bed does come open—subsidized or not—or for regular respite if I have him at home.
My next call here will be to our used-to-be-Case-Manager, who has never met Bill and who has told me flatly, twice, that I would not get any support from Home and Community Care if I brought him home. I will try to convince her otherwise. Next call in Victoria is to the Seniors' Advocate to hopefully set up a meeting for when I’m there next week.
Yesterday and today Bill is reported to be talking a lot and doing really well. Had showers both days and no resistance to care at all. That's two full weeks! The biggest positive effect I've seen from the ECT is that he has regained his ability to speak well and express his wishes and needs. In the 5½ months he was in hospital before ECT treatments started, he had lost almost all of his vocabulary and was often completely non-responsive. It’s possible the removal of many of the drugs he was on from his regime may also be playing a significant part in the positive change.
How important is one's ability to speak? In my view, incredibly. I've seen that the nurses who had trouble with him and vice versa started to treat him quite differently when he regained his ability to form complete sentences. Their approach became more 'person' oriented instead of 'management' oriented. It makes me sadder for those who are robbed of their speech by drugs and/or the disease and have no one to speak for them.
He was moved into the only double-occupancy room last week after staff called me to ask if they could move him because he was the only other patient on the ward besides the patient who is sharing with him they thought could share a room. I’m taking that as a very good sign.
I'll be heading back to Victoria this Tuesday, returning home Friday.
After the Rise, the Fall
Just back from four days of a whirlwind of the whole range of emotions I can still feel. The upside: Bill is still incident free. He had a wonderful evening Tuesday, a great day Wednesday, and when Stephanie and Lily arrived on Thursday, he instantly recognized them, cried and laughed at the same time, and cracked jokes. When we went to the sunroom to sit for a while, another patient came and pulled up a chair and joined us. When we left the sunroom, that patient came with us to the common room, where I put on the ABBA music video I’d bought. Very quickly other patients and their families started coming into the room and so did staff.
Stephanie, Lily, Bill and I started dancing, and the patient who had adopted us for the day got up from his chair and danced, too. Staff, patients, and their families were jiggling and swaying. Everyone was grinning. Our adoptee’s nurse was ecstatic he was having such a good time. He is by far the best boogier on the ward and can bust a mean move.
But when I arrived early Tuesday afternoon, Bill was walking around, slowly, head and upper body on a tilt to the right. His nurse came right out of the hub and told me that that morning he had been brought back from ECT in 4-point restraints. First I knew he was having ECT that day. She said she didn't know why he was in restraints but told Security to release him immediately, that he understood what was said to him and he would get off the stretcher himself and go to his bed.
She did get him released and Bill got himself to his bed. She said Bill then told her he did not want more treatments, and said, “Help me, please,” to her several times, which broke her heart. She has a wonderful rapport with him. He talks to her, and I know she advocates for him. I couldn’t stop my tears. Trying to make me feel better, she added that in spite of whatever had happened at ECT and the restraints, Bill had provided no resistance to care either before or after the treatment, which made it eighteen days.
A short time later, I was going to shave Bill and he cringed and cried out when I touched his jaw. I'd read that ECT can make a jaw sore, and his certainly was, so was his neck. I told his nurse, who gave him extra pain medication. Within an hour Bill was walking straight again, and said he felt much better.
Later, the Social Worker stopped for a quick chat and told me she'd seen him before he was taken to ECT, and he'd been lying on his right side on the stretcher and was perfectly calm. So what happened when he got there? No one on Bill's ward knew. Bill’s nurse said there was a new doc administering the ECT and a new anaesthetist, but my feeling was he’d resisted because he didn’t want anymore ECT and no matter what he says he does or doesn’t want regarding any treatments, he is not listened to. He has just one recourse—fight physically. Being certified in our system means no one believes you have any rights whatsoever. Jailed murderers are treated far better.
Second upset. Psychiatrist #3, Dr. M, came onto the ward Wednesday afternoon. I’d met him once before when he took over from Dr. A while she was away for a few days in the first month Bill was in the Jubilee, and he’d told me Bill would have to go to Cowichan or Parksville before he could come back to Campbell River, if Bill could come back to Campbell River. On Wednesday, he said that when Dr A returns from holidays she isn't returning to inpatient care and he will be taking over her cases. That jolted me and my stomach twisted. We would be starting over.
I told him Bill has been resistance free with personal care for almost three weeks and that Dr A told me that when he was stable, which meant had not resisted care for two weeks, he could be discharged from involuntary Tertiary Care. I asked him to please start wrapping his head around discharging Bill from involuntary Tertiary Care because I want him back in C.R.
His reply was, “Are you aware that after ECT Security had to be called for care yesterday morning?”
I felt my back stiffen. “No,” I replied. “I was told by his nurse he hadn’t resisted care before or after ECT. And Dr. A said the day she left Bill’s record has been clean from July first. Also, every day I wasn’t here I called and every nurse I talked to said the same thing. So if Security was called, it wasn’t because there was any aggression on his part.”
Dr. M then switched the conversation to ECT and I said, “I’m very concerned Bill was restrained, and that after the treatment he was canting to the right when he walked. Also, he’s now afraid to step across the threshold of his bedroom because the lino in front of the door has a dark strip and beyond that it's light beige, and he seems to think the dark strip is a hole. And shadows on the floor are making him leery of walking forward. His depth perception has been impaired.”
“That happens with Alzheimer’s,” M said.
“Maybe,” I said, “but it doesn’t happen overnight, which it did. Until yesterday’s treatment, he had zero issues with depth perception. He walked with full confidence. I want the ECT to stop.”
That engendered a twenty-minute discussion, most of which was just me listening to him tell me all the reasons he wanted it to continue, and he said he also wanted to double Bill's sedation prior to treatments, which I totally disagreed with, and told him all the reasons why. He said the nurses said there had been a huge change in Bill but he’d visited Bill on Monday and didn't see any change.
The doctor had begun this whole conversation by coming and standing in front of the loveseat both Bill and I were sitting on in the common area and speaking as if Bill wasn’t there. But he was. Right there, beside me. I’d wanted to get up and move away from him, but Dr. M didn’t move. Now I looked at Bill and said, “The doctor doesn’t think you’ve changed. He thinks you’re still thirty,” at which Bill laughed and M was taken aback. Then he said, “Bill's only had five treatments,” and it was my turn to gawk.
“Actually,” I said, “he's had ten.” Now acutely uncomfortable about talking about Bill as if he was invisible, I got up from my seat and walked past M into the hall. M followed. He went on about how he'd seen patients backslide when ECT was stopped cold turkey, and we should keep going until he (M) decides it's as good as it's going to get. That made me bristle again.
“He doesn’t know you and might not have responded to you, but before yesterday’s treatment Bill was back to where he'd been before he was hospitalized,” I said. “And I do not want to jeopardize it more.”
Without missing a beat and as if he hadn’t just said he hadn’t seen any change in Bill, M said, “The gains are exactly why we should keep going. We don’t want to lose that.” Complete disregard of the fact I’d just said gains had already been lost.
He didn’t let up and I could see he wasn’t going to. In the end, I agreed to tapering the treatments, one a week for two more weeks and a final one two weeks after that, which would make 13 in all. But I didn’t plan on Bill still being there for that long. M then disappeared.
When I saw the LPN who'd called Security when she'd taken over from Bill’s nurse the day before, I asked her why she had called Security.
She said, “Nothing happened. It's just that he came back in restraints and he was flat and I couldn't gauge his mood, so we had to call Security to just stand by. Because Bill's unpredictable,” she added.
There's the old bugaboo raising it's ugly head again…unpredictable, i.e. presumption of danger when there was no just cause for it. And another purple dot on Bill’s chart.
About an hour later, M reappeared and said, “Mrs. Reekie, it's not quite right that there've been no incidents. In the past three weeks Security has been called five times.”
I gritted my teeth and repeated with authority, “When I was here, there were no incidents. When I wasn’t here, I spoke to the nurses every day and there were no incidents. If Security was called, it wasn’t because there was any aggression on Bill’s part. Please read Dr. A's file. It contains all of the correspondence I've had with doctors and the Quality Patient Care Control Board regarding Bill and will give you the full background.”
“I’m not going to get to that,” he replied, and walked away.
Later, I saw him in the hub reading a chart, presumably Bill's, and a short time later, as he was leaving the ward he called over his shoulder to me, “Well, they're still using caution.”
The whole encounter made me so mad and anxious I spent a terrible night and the next morning (yesterday) I called Susan, the Social Worker, to set up a meeting. Yesterday afternoon I met with her, Linda, and Brynn—a nurse I was told is taking over for Erica as Clinical Nurse Leader because Erica is now on maternity leave. Nothing stays the same except change.
I asked about the restraints—no one knew why they'd been used—and I expressed my anger about them, my concern about Bill walking on a tilt following ECT on Tuesday and his new loss of depth perception, and said I felt I'd been manipulated by Dr. M, who's opening salvo had been to say Security had had to be called for care Tuesday morning, and then later he tried to push the point home that Bill wasn't ready for discharge and needed more ECT by saying Security had been called for care five times in the past three weeks, which was misleading.
I said I did not want Bill to have any more ECT treatments because I knew that on Tuesday the electrodes had been moved from his frontal lobes to his temporal lobes, and I am now afraid more treatments may hurt rather than help him. I cannot stand the thought that just when he's back to the way he was before he was hospitalized he could be put back to square one. I also said I want Bill discharged from involuntary Tertiary Care now, and I want him home in C.R.
Linda said, “Getting Bill back to Campbell River is going to be very, very difficult because you only have one dementia unit there.” I corrected her, gave her names of three places here that have such units, and told her I'd been in touch with Evergreen and that the manager there also told me they have a program where they can supply caregivers to come into the home, which interested me.
As if she hadn’t heard that, Linda replied, “Can we move Bill to Nanaimo instead of Campbell River?”
My answer. “No. If I can't get a bed for him in a care facility in Campbell River, I will bring him home and make it work.” Linda then said she was going to ask for a second opinion re the ECT, Brynn said he was going to do something…not sure what…and Susan said she would connect with the Liaison Nurse in Campbell River.
I thought it was all settled, but then at 8 p.m. last night, Dr. M called me at my hotel. He was distressed I'd asked for a second opinion re the ECT, said he could get one but not in time for Bill's next scheduled treatment (which was going to be Tuesday, when I can't be there)—and he again started pushing for ECT and for increased sedation.
Fed up, I lost any restraint in the language I used to reply. “I feel like I’m being manipulated,” I said. “The last treatment hurt him. There’s no way I’m going to stand for him being put in restraints again, ever. And you and I are not on the same page regarding sedation. I want Bill home.”
He again said there was a danger of backsliding with cold turkey (Brynn had said the same thing during the meeting that afternoon), and I knew M wasn’t going give. I agreed to tapering, but insisted on no increased sedation prior to the treatment. I also said it can't happen until I can be there, which is next Friday. M agreed.
The bottom line is: Bill has been doing really well. I don't trust Dr. M. I don't trust the new people who are administering ECT not to hurt Bill, and in spite of the good effects I witnessed before the temporal lobe treatment, I am uncertain about more ECT at all.
M has shown he'll use any means of miscommunication to get my permission to do what he wants to do. If I hadn't been so religious about calling the unit to get updates on Bill's behavior every day I'm not there, and about gathering all the information about him when I am there, I would have been fooled by his representation of Bill's response to care when I wasn’t there. And that infuriates me. I feel like M’s agenda is, let's see how far we can push this.
On top of that is what Bill has to endure from other patients. This afternoon, one of the newer female residents—there are now four women on the ward—came into the common room while I was there with Bill. She plunked herself down beside Bill and immediately leaned over and began trying to pull his clothes off him. She regularly disrobes herself.
I said, “No, he doesn’t want to take off his clothes,” and she kept trying. So I took hold of her wrist gently and stopped her. She then took off her own pyjama top, and I got Bill up and moved. The entire time, he had simply ignored her and had not reacted at all.
Then the female patient stood up and started to take off her bottoms, and a Care Aide came out of the hub and led her away. I wondered how many times that scenario has played out when I haven’t been there, and I wished Dr. M had been there to see just how calm Bill was.
Everything Bill has to endure is tying my stomach in knots. For the first time I wish I actually could see into the future. How long is all this going to go on?
The Brighter Side
I just got off the phone to the hospital. Talked to Bill’s nurse. She said Bill has been fabulous since I left late Friday afternoon. “He was a bit anxious with care Friday night when too many people were washing him at the same time,” she said, “and he said he wanted to shower himself, and did, and was fine. He's been able to say clearly what he likes and needs, and what he doesn't want. He told us he did not want to go to the bathroom in his pants and says when he needs to go; so we’re taking him to the toilet. He’s joking with the nurses, and has become huggy.”
They're dressing him in clothes again now as well, and he’s told them he likes it. His nurse said he has also become engaged with what's going on around him. Apparently one of the other residents was asking where the bank was and Bill said, “You know you're in the hospital, right? There's no bank here. There’s probably a bank machine somewhere, but no one’s going to let you go there.”
Another resident stripped himself naked, and Bill’s comment was, “Good grief, I think you’re probably going to be pretty cold like that.”
“So this is Bill. He's probably back to being who he is huh?” his nurse said.
I laughed and agreed they’re seeing some of who he is. I asked to speak with him on the phone and he was able to carry on a conversation, albeit a simple one. He hasn't talked on the phone for a very long time so that's a breakthrough, too.
All of this is pretty small stuff in the everyday world, but for Bill it's huge. And for me. They're actually seeing him as a person rather than a case. And more than ever I want to get him out of there now!